Remicade wears off fast for me, still have joint pain..went to the prominent university here, to a rheummy...And i got a trustee, a resident..and then the rheummy....Who says she knows the Remicade rheummy by first name....grrrr

but they did about 7 vials of blood ( wasn't happy with Remicade rheummy)...and i asked for a copy of labs

so i searched the internet about those 2 high numbers....and got another rheummies name
on 12/28 i saw her..and she ordered another 5 tubes blood

and i left my previous labs with her for a week... ( few years worth)..my basic history, with her, as i was new, and dumping all this on her

so she calls me, left me a message, with Hippa, she can't leave medical message? I call her back, and get her nurse, and she tells me do to my complex history, she can't HAVE me as a patient..go back to university...FIRES ME?

We go back there for my paperwork stash, and there is a letter on it, with the results of the newer labs 12/28
and the letter says....."Due to the complexity of her problems and the fact she was already tried on all available treatments ( what??????) for RA with apparent persistent symptoms i would recommendd that she continue to follow up with university, where she was recently seen on 12/19/2012

First let me welcome you to WHL! I have lots to say but I am heading out at the moment. It is kind of quiet around here on the weekends so don't feel bad if you don't get a lot of answers. They will come. I will answer tomorrow when I can go over this a bit more but my first thought is why were you not on plaquenil already?

Anyway. Welcome to our family! We are glad to have you!

jointpainlady

01-19-2013, 09:03 PM

Thanks...never was told i had lupus before..first Ra, then few yrs ago psoriatric arthritis

in 1995, was put on Mtx, NSAIDS, prednisone...at one point maybe plaquenil ( guess it didn't help then) added for a year...i didnt save reports and such then..didn't have a computer....Enbrel was great, but konked out after 3 yrs

interesting, i have brought that up, a few times....was reading here EBV test?...i had a bad case of mono when i was 18....affected my spleen, was in hospital, doctors say..this mean, remicade nurse, that she doesn't know of a connection

sed rate is 23...i did see it a 58 once, hasn't always been high, i guess.....i only started getting smart and saving stuff, last few years

thanks!..have a great evening

jmail

01-20-2013, 08:57 AM

First of all jointpainlady, welcome to WHL, and 2nd of all, a person with elevated Ig components (or depressed levels) should be seen by a hematologist, ie, a blood doctor, for evaluation and testing. All test results should be shared by the hematologist, rheumatologist(s) and primary care docs. Immunoglobulin problems are symptoms. The issue can be caused by auto-immune issues, or medications, or other causes. Get a good hematologist as soon as you can.

jointpainlady

01-20-2013, 09:25 AM

Thanks so much for the reply Jmail!

I saw the skin doc on the 17th, the PCP is in the same clinic...and they were way ahead of everyone, with electronic records...So i told skin dr. to forward a copy of her findings to PCP.....I like the PCP, but he is very busy, he is also a pediatrician, internal medicine..

But he has a NP, and a PA...I am comfortable with all 3 of them, as they listen, and don't rush me. The PCp will never ever call me back himself, his nurse does. Now this rheummy i am going back to, Thursday. He will call me back himself, for a flare, will call in a script..has answering service... He will even call back on a Saturday night.

I guess i better wait for his guidance Thursday, or i could call PCP Monday...Same day or next day appts are available with the PA, at the PCP office.

All of a sudden, i am having trouble getting blood for my diabetes stick. Using the other hand, and have a fresh needle....thinking this is tied in together, with blood issues?

It's going to be bitterly cold, Monday and Tuesday here, single digits, BUT NO SNOW...RECORD BREAKING !!!!!!....I was going to bunker down, but i am a little concerned about this, as you can tell

I think i will call the PCP office tomorrow...I shouldn't have left rheummy #7...he didn't know what to do with me, with clearing up the pustular psoriasis. Now with this rheummy #7, he prob is on call some wknds, and would even take my call today!....Haven't szeen him in 2 yrs. But he has a fantastic reputation

Thanks again...any ideas appreciated greatly

also i need a breast needle biopsy on the 29th...they said no blood thinners, aspirin...this was set up before all this !!!

ritzbit2

01-20-2013, 10:34 AM

I've never heard of having to see a hematologist because of raised immunoglobulins. All it means is raised antibody levels in the blood. And I just wanted to add that after having 1 autoimmune disease its not uncommon to end up with another. The fact your mom also had both RA and Lupus also means there is a slightly higher risk for you as well. I don't know if you have already seen this but this is info about drug induced lupus. http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?articleid=377 I'm not a doctor so I won't say that it couldn't be DILE, but the fact you already have another autoimmune disease would make it more unlikely in my opinion (the drug induced part). If it is in fact lupus plaquenil is a good place to be starting medication wise.

tgal

01-20-2013, 10:41 AM

I only have a moment but I wanted to point out that Drug Induced Lupus goes away once the medicine that causes it is removed from the system. It is not Drug Induced if the disease stays when the medicine is removed

Thanks...i decided to call PCP tomorrow, i will explain everything to his nurse.

This mean rheummy, the Remicade one, hasn't done a whole lot of labs...except for watching elevated liver labs ALT/AST..I did have liver biopsy, ultrasound all that.....not from MTX. I am not obese like 100 lbs overweight...maybe 30 lbs?...LOL
but it's fatty liver, could lead to cirhhosis...and i don't even drink!....can't from mtx

how everyone is differant.

i got the billing statement from those 7 tubes of bloodwork, holy cow are they expensive....i have religiously saved blood tests copies last 4 years, some have said speckled, now it's homogenous

but skin doc, and rheummy that fired me, have said i probably won't be going back on a biologic...almost 13 yrs on them

i will get copies of all those labs for rheummy visit thursday..4 more days!

yes checked all that on internet, thanks..Remicade can cause drug-induced lupus...and i was up to 900mg, max

at least i won't be tethered to a IV pole every 6 weeks anymore....hard finding a vein, those poor nurses

i bet they will be doing these kinds of bloodwork more often now, just like as they check on the liver

have a relaxing Sunday all!

BonusMom

01-20-2013, 02:23 PM

Welcome aboard!

Initially, I had positive ANA, homogenous. The next time my ANA was tested (less than six months), it was speckled.

I've never had a butterfly rash.

tgal

01-20-2013, 08:00 PM

No two cases of Lupus are exactly alike. As was said previously, we don't all have the exact symptoms. Also, our labs and symptoms can change due to flares, meds and a host of other factors. Some doctors will stop running an ANA once they get a positive result because they know that it will fluctuate.

Lupus is diagnosed not because you have all the symptoms or labs at once but because you have had enough of them over time and everything else has been ruled out.

I wish you good luck with the doctors and hope that you find the answers that you are looking for

jointpainlady

01-20-2013, 08:58 PM

Thanks BonusMom...skin doc said i did have some redness on nose, and that circular area on cheek, is just broken blood vessels, redness.

A diff skin doc, few years back, wasn't sure about psoriasis, i took my labs, and he said i was borderline for lupus.

Thats what i thought too, Mari......i timed it right, Remicade was do on 12/20.....and it was 12/19 when i saw university rheummy, and those residents..and they did all that bloodwork...the flare showed in labs, but not sed rate ( 23)

I remember being on Plaquenil, maybe 1996, along with 2 other DMARDS...because i had to go see an eye doctor. It may be that i was just one it a few years...i wish i had written it down, . I guess things changed over the years, one thing developed into another . How true, having one auto-immune disease, we get others...I guess the plaquenil didn't work as well then....but it's amazing, ..been on it a month now, and it's been making a huge differance with swelling in my fingers

Do any of you go higher on the Plaquenil than 200 mg twice a day?

Thanks for the replies, much appreciated...the medical knowledge we gain from all this!

I remember my moms neighbor across the street, her daughter died from lupus, it might have been 1963, or 1964. She had gone to Jamaica, got that discoid rash on face, and then died after adopting a baby. It was so sad.

I remember my mom saying at the time, they didn't know that much about lupus back then.

tgal

01-20-2013, 09:25 PM

400mg a day is the max dose fornLupus patients. You are really lucky to have it working that fast. Plaq. Usuly takes between 3-6 months to reach its full effectiveness so if you are already getting results you may end up with really good results a few months down the road

jointpainlady

02-15-2013, 09:21 PM

Hi...just an update to this

had labs 12/18,1228, and 1/28

beta 2-microglobulin test repeated, still H....3.10
sed rate came down a bit....19 ( from plaquenil prob)....sed rate hasnt always been a big issue, just a couple times i saw it high

went wednesday to see him, i has asked for a depo-medrol shot....i feel the remicade has left my system
and i had to get off celebrex, plaquenil, mtx this week

just got diagnosed with breast cancer, already going for lumpectomy next week....and i tell u these meds work, when offa them, even little celebrex, the pain!

I can maybe resume plaquenil sooner than mtx ( have to be off mtx for a month)..resume celebrex, maybe in 3 days after surgery

and its a YES, i have LUPUS, not drug induced....have tested positive before
then he looks and explains it to my DH, well she didn't ahve the syptoms, like lung, kidney heart involvement....well what about joint pain!

just cause they always don't see it in my hands..yea, funny how they swell up at night, never when i am in rheummies office

so i am allowed to take prednisone, and Norco....didnt want to get on prednisone...10mg in the AM, and 10mg at night..just to sleep without pain

the pain gets in my neck, well everywhere, but i hate it when pillow hurts neck, just to sleep..and prednisone helps more than a pain pill...so i am inflamed

ugh, the PA at the PCP understands better than skin doc, or rheummy

other rheummy that fired me, #10, says go to skin doc, have them biopsy leftover peelings on palms ( they said pustular psoriasis)

so i did, she said i don't have to do biopsy, it's all right here in the labs

and then rheummy says something else, i don't show symptoms!

sweet huh?
them confusing me, and aggravating me

anyhows, i am trying to have postitive vibes, and humor...got to get well, have 2 dogs depend on me, and that squirrel in the tree!..LOL